On Behalf of the Board of Directors I Wish to Thank
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n behalf of the Board of Directors I wish to thank all of you who helped during this year’s Organ Editorial... Donor Awareness Week. Thankfully, we have a core of completely dedicated volunteers who valiantly turn up year after year. We, of course, Owould always welcome additional volunteering but true to our ethos we have succeeded, over the years, in resisting using professional fundraisers and none of our volunteer collectors receive commission of any kind. I think these facts will stand to us in the future and the trust the public have in the IKA is essential in our call for people to consider carrying the organ donor card. The new Programme for a Partnership Government document includes the following sentence on page 57 We will also propose legislation in the following area: G Family consent and opt-out register for organ donation before the end of 2017. We will probably have had our meeting with the new Minister for Health, Simon Harris TD by the time you receive this magazine. As regular readers of SUPPORT will know, the consent for organ donation, in our strongly held view, is not a barrier to organ donation’s growth in this country. We would favour a register for the individual’s decision on organ donation, ‘yes’ or ‘no’ rather than the proposal to simply have a register of the people who say ‘no’ to organ donation. It would be possible for us to promote organ donation in a brand new way by encouraging people to sign up to organ donation on a register, as is done in the UK. We would never discontinue the organ donor card but, instead, would have a strong new message to offer the public if the Department of Health and the HSE would adopt and realise our point of view. Congratulations to Senator Mark Daly on his success in Contents... retaining his seat in the Senate following his nomination from the IKA. 2 EDITORIAL 4 STRANGE BOAT DONOR FOUNDATION FRONT COVER 5 NOTICE OF PATIENT CONFERENCE/EGM/AGM 27 year old Janice Moran from 6 RUN FOR A LIFE Drimnagh, Dublin at the National launch of Organ Donor 10 SISTER ACT Awareness Week in the Mansion House. 11 NATIONAL LEARNING NETWORK Janice was diagnosed with kidney failure a year 12 RESULTS HOLIDAY DIALYSIS SURVEY and a half ago and is undergoing 14 WEST CLARE WALK 10-hour nightly peritoneal dialysis 15 ANNUAL SERVICE OF REMEMBRANCE treatment since then. & THANKSGIVING 2 IKA SUPPORT S UMMER 2016 Vivienne Traynor has proved to be a most popular areas in Europe where the kidney patients with Ambassador for organ donation. Her willingness to inherited disorders meet in their own Federation and share her personal stories to the media, along with the EU have all inherited disorders cohorted so many others, enabled the publicity during the together in specialists groups. The Patient awareness week to be so much easier. Gwen Conference will discuss this in depth (see notice O’Donoghue, of Connect Communications, inside). consistently does a magnificent job for us every year, Whilst we are now in the middle of what is with the media and, thankfully, our timing did not normally a quiet time for our branches, as they coincide with other national or international events. attempt to take a well-deserved break to permit The steep rise in haemodialysis patients at the end holiday time, work in Donor House continues with of 2015, with an extra 125 patients being dialysed the oncoming sports events, EGM/AGM and the across the country, has impacted sharply on capacity planning of this year's Service of Remembrance and in all dialysis units. Therefore holiday dialysis has Thanksgiving by our Liturgy Committee. unfortunately, once again, almost come to a halt. May I take this opportunity to thank you all for The results of our holiday survey of patients are your continued commitment and endeavours which contained inside this SUPPORT and do please talk to support our patients and I look forward to meeting Deborah in Donor House if you are interested in our many of you at the EGM/AGM. group holiday between October 1st – 8th in Estoril, Portugal. The IKA recognise the importance and beneficial effect of holidays for our patients and we will continue, in the future, to explore various new avenues. We are on the eve of two transplant and dialysis occasions with the European Games in Vantaa, Finland and the British Games in Liverpool. I wish all MARK MURPHY the athletes and supporters the best of competition. These events give us extra opportunities to promote the benefits of transplantation to a different sector of the public. The Patient Conference preceding the EGM/AGM on Saturday September 10th with be of particular interest to any of you with an inherited renal disorder. About 8% of the renal patients in Ireland have polycystic kidney disease (PKD) and there are others with other inherited renal disorders.There are 16 RELAXATION IS GOOD FOR US 6 18 CROAGH PATRICK CLIMB 26 PUNCHESTOWN 2016 19 WOMEN’S MINI MARATHON 27 NEWS 20 CASTLETOWN BELLES 28 POTASSIUM – A HEALTHY BALANCE 21 9TH EUROPEAN TRANSPLANT & 30 SOCIAL MEDIA & COMMUNICATION DIALYSIS SPORTS CHAMPIONSHIPS 31 MAUREEN MURPHY 22 5 NATIONS TRANSPLANT GOLF 32 LAUNCH OF ORGAN DONOR TOURNAMENT AWARENESS WEEK 24 SON DONATES KIDNEY TO FATHER 36 AROUND THE BRANCHES 25 A STRANGER IN NEED OF A 63 MEMBERSHIP FORM KIDNEY DONOR DEED! 64 BRANCH SECRETARIES IKA SUPPORT S UMMER 2016 3 STRANGE BOAT donor FOUNDATION A giant stone candle was community in Northern visitors from Northern recently unveiled at Botanic Ireland and Denis Goggin, Ireland, and given this new Gardens in Belfast, in Founder of Strange Boat civic dimension and recognition of all the Donor Foundation connection between people who have donated commissioned the ‘Candle’. Galway and Belfast there is their organs to give the ‘gift It is a replica of the candle huge potential for further of life’ to others. sculpture located at the connectivity and goodwill Alderman Brian ‘Circle of Life’ garden in from a north/south Kingston, Lord Mayor of Salthill, Galway. perspective.” Belfast said: “I am Denis and his wife absolutely delighted to Martina set up ‘Strange unveil this very moving Boat Donor Foundation’ sculpture in the beautiful after their son, Eamonn, surroundings of Botanic lost his life in a tragic car Gardens here in Belfast. accident in 2006. His This generous donation organs were donated and from the Galway Civic Trust he was able to help save is gratefully received and the lives of four people. shines a positive light on The Lord Mayor of organ donation across the Galway, Noel Larkin said: island of Ireland. “Galway is already a very The organ donation popular destination for 4 IKA SUPPORT S UMMER 2016 SATURDAY SEPTEMBER 10TH, 2016 PATIENT CONFERENCE The theme of the patient conference at 11.00am, preceding the EGM and AGM of the Irish Kidney Association, in the Louis Fitzgerald Hotel, is INHERITED DISORDERS. The IKA is considering establishing an Inherited Disorders Committee for this cohort of patients. TESS HARRIS of PKD International will speak on the proposal that Polycystic Kidney Disease should be treated in a specialised manner within kidney disease and her success in establishing an ADPKD forum in Europe. Tess is also a member of FEDERG (Federation of European Patient Groups affected by Renal Genetic Diseases). LIAM PLANT, Consultant Nephrologist and Clinical Director of the Irish National Renal Office (NRO), will contribute to this discussion about establishing an Inherited Disorders Committee and he will also hold a general Q&A session. NOTICE OF EXTRAORDINARY GENERAL MEETING NOTICE IS HEREBY GIVEN that an Extraordinary General Meeting of The Irish Kidney Association Limited will be held on SATURDAY SEPTEMBER 10TH, 2016 at 2.00pm. The Association will hold an EGM to seek the approval of the members for changes to the name of the Company and the Memorandum and Articles of Association which will be known in the future as the Constitution. These changes are required under the new Companies Act 2014, which came in effect on June 1st, 2015, and replaced all previous Companies Acts. All existing companies, like The Irish Kidney Association Limited, that are limited by guarantee and not having a share capital will become a Company Limited by Guarantee or “CLG” with a new Constitution by November 30th, 2016. By FRIDAY, AUGUST 19TH, 2016, Notice and Agenda of the EGM will be available to all members from the IKA website. NOTICE OF ANNUAL GENERAL MEETING The Annual General Meeting of the Irish Kidney Association Limited will be held on SATURDAY SEPTEMBER 10TH, 2016 at 2.15pm, immediately following the Extraordinary General Meeting. Members can propose Motions and Resolutions for the AGM, which must also be seconded by another member. These SIGNED Motions and Resolutions must arrive, by post, at Head Office, by FRIDAY, AUGUST 12TH, 2016. By FRIDAY, AUGUST 19TH, 2016, Donor House will send, by post, Notice of the AGM, including the Agenda, Accounts, Motions, Resolutions and Proxy Voting Forms to all Branch Officers. These will also be sent electronically to members who have given us their email address and will be available to all members from the IKA website. All SIGNED Proxy Voting Forms must arrive, by post, to Head Office by noon on FRIDAY, SEPTEMBER, 2ND, 2016. IKA SUPPORT S UMMER 2016 5 And they’re off! By COLIN WHITE Run For a Life has become a regular feature on our annual calendar of events. I don’t know how often we checked detailed weather forecasts in the days leading up to the event but thankfully, the weather did not let us down on the day! 6 IKA SUPPORT S UMMER 2016 I want to acknowledge the 175 people registered on the event sponsor, Astellas day, nearly 50% higher than Pharma Co.